The psychosocial impact of chronic illness

Abstract

Depending on the severity of thalassemia and the level of health care provided, the thalassemic person may suffer from his/her chronic condition going through the path: disease-->impairment-->disability-->handicap. There is evidence that a high clinical burden is associated with a psychosocial burden for the patients and the family. In Greece, support strategies have developed in the last twenty years to help the thalassemic patient and his/her family. Recent studies in 909 patients show that the life span is prolonged (mean age 27 years), 83% of the patients study or work, 12% are married and 2.3% have set up a family, and 98% utilize the social benefits provided (free education, free entrance to universities, tax allowances, cash benefit, early retirement, etc.). However, psychometric tests performed in 131 patients and 65 matched normal controls over 14 years of age have shown that hostility (extroverted, delusional, total p < 0.001) is an important component of the psychological profile of the patients. The patient's role through their association is strong and undoubtedly has influenced the public's extremely high (93%) awareness of the basic features of the disease and the supportive attitude of the average Greek citizen toward the life style of the thalassemic patient. On the whole, in many thalassemic patients illness has overpowered all other aspects of life. For few, however, life is much more than an illness. Shouldn't this be the message for the patient's psychosocial support strategies?